PARC Project

Autism Care

Research
Education
Community
Policy

Research

“Future research needs to focus not only on the biological markers of ASD but also include data about functioning, participation, and environmental barriers and facilitators.”

Dr. Olaf Kraus de Camargo  //  Developmental Pediatrician

 

MacART is laying the foundation for creating a systematic way of linking scientific research on Autism Spectrum Disorder (ASD) at McMaster University to clinical practice at McMaster Children’s Hospital.

The physical proximity of McMaster Children’s Hospital, Hamilton Health Sciences, and McMaster University has a number of characteristics that provides the rare opportunity for collaborative research. Taking advantage of existing university and clinical infrastructure and cross-appointments for clinicians at the university, ASD experts from these organizations are coming together to integrate ASD research into clinical practice.

The focus of MacART members’ research is in the areas of basic science, clinical practice, clinical research, epidemiology and statistical modelling, knowledge translation and exchange, and social science research. By promoting the collaboration of stakeholders across disciplines, MacART is reducing barriers to implementing research in clinical practice, with the goal of advancing autism care through meaningful research.

Learn more about our research HERE.

Education

MacART members are now supervising more than 50 research trainees at the undergraduate, graduate, and postgraduate levels, and are engaged in the mentoring of junior and intermediate faculty members.

In the future, we intend to establish research and clinical training programs for students in McMaster’s undergraduate medical, health sciences, and psychology programs, and for residents and fellows in Pediatrics and Psychiatry.

By training and mentoring emerging researchers and practitioners, we will help to solidify their understanding of and commitment to using basic science to inform their clinical practice, and to use their clinical experience to help formulate research questions. It is our belief that involving these learners in MacART educational activities will promote their use of practices that advance autism care through meaningful research.

Community

“Our scientists are working collaboratively with local clinicians to generate the evidence needed to improve autism services. This symposium is a great example of McMaster’s community engagement efforts.”

Dr. Patrick Deane // President & Vice-Chancellor // McMaster University

 

The community engagement component of MacART strives to work with stakeholders and involve them as partners in every step of the research process.  By doing so, the questions that drive research begin to change. They become more meaningful because they address the real day-to-day challenges faced by children and their families, and the clinicians supporting them.

MacART aims to increase participation and involvement of members of the McMaster and Hamilton communities in the research process. With community members driving the research, new and relevant knowledge can be produced to bridge the research-to-practice gap in ASD and advance autism care through meaningful research.

Policy

“People whose lives are connected to the challenge of autism can share knowledge – from clinicians to educators to parents – and what an amazing opportunity that is. We have a real opportunity to translate challenges into research, and research into practice that will help families living with autism.”

Rob MacIsaac  //  President & CEO // Hamilton Health Sciences

 

Policies should be created using the best available evidence that make positive impacts on the lives of individuals with ASD, along with their families.

MacART’s founder, Stelios Georgiades, serves on both federal and provincial advisory committees about ASD treatment funding.  Along with the wide-ranging expertise of its many ASD experts, MacART is set to act as a highly credible source of evidence-based information to influence and inform public policy about the provision and funding of ASD diagnosis, treatment, and family supports.

MacART will continue to find ways to collaborate with policymakers to both learn more about the policymaking process, and to contribute our expertise and knowledge to inform policymaking, in order to advance autism care through meaningful research.

Pediatric Autism Research Collaborative (PARC) Project

Team Members:

Primary Investigators – Dr. Stelios Georgiades; Dr. Teresa BennettDr. Caroline Roncadin
Co-Investigators – Colleen Anderson, Amber Cauwenbergs, Kathleen Dekker, Briano Di Rezze, Judy Eerkes, Kathy Georgiades, Loraine Hoult, Chuck Meister, Ronit Mesterman, Olaf Kraus de Camargo, Bill Mahoney, Olivia Ng, Sue Robertson, Peter Rosenbaum, Steve Gentles

Project Period: 2017-2019

 

 

 WHY ARE WE DOING THIS RESEARCH?

We are working together with clinicians at the Ron Joyce Children’s Health Centre to develop a Research Protocol that will be embedded into the Autism Spectrum Disorder (ASD) Service Program. Right now there is a lot of information collected from families in ASD Service, but there is no process in place that allows research to be done in a systematic way that can then inform the treatment children receive at the clinic. Through this protocol we hope to improve our understanding of ASD, as well as improve the individual treatment and clinical care that children receive at ASD Service. 

 

 

 WHAT IS THE PURPOSE OF THIS PROJECT?

The PARC Project will be pilot testing this new Research Protocol by asking 50 families of children newly diagnosed with ASD to take part.

Families will be asked to allow their clinical information to be entered into a project database, together with additional information collected during the project. This database will be analyzed for information on children’s functioning, abilities, and trajectories over time. This information will be used to inform the clinical services that children are receiving.

 

 

WHAT WILL THE PROJECT INVOLVE?

In Stage 1, families will be asked to contribute data that are already being collected at ASD Service into a central database that can be analysed and interpreted by researchers and clinicians.  

In Stage 2, other data (for instance, on a family’s social or clinical factors) will be collected.

In Stage 3, interested families will be told about other research studies they may be eligible for. 

 
 
 
 
 
 
 
 
 
 

 

 

 

 WHY PARTICIPATE?

The PARC Project has been designed for minimal burden on families. We know families are already very busy! Stage 1 uses the data that are already being collected by ASD Service during their child’s visits. Stages 2 and 3 are optional and can be done at a family’s convenience. Participants may refuse to answer any questions they do not want to answer and remain in the project. Participants may stop at any time and it will in no way affect the care they receive at the hospital. Families may be interested in taking part in other research studies or none at all.

 

The PARC Project has also been designed through stakeholder collaboration. We have received feedback from consultations with clinicians and parents, so that we can do research in a way that is meaningful for families as well as efficient for those who are providing care and treatment. 

 

By conducting this pilot project we will be able to see what parts of this Research Protocol work well and which parts do not, so that in the future we can fine-tune it. The eventual goal will be that every child enrolling in the ASD Service Program at McMaster Children’s Hospital also participates in research, which will then inform their care as they grow older. This information will help us gain a better understanding of what contributes to healthier outcomes for children with ASD.

 

 

Please note that at this time we are only recruiting families with newly diagnosed children with ASD who are beginning services in the ASD Program. If you are a family who is already receiving services and is interested in research, there may be other opportunities available for you.

 

Still have questions? Check out our Frequently Asked Questions (FAQs) page here.

 

Project coordinator: Anna Kata

Primary Contact: Anna Kata at kataa@mcmaster.ca or 905-525-9140 ext. 21511